Christy's 4 month update - Tonsils, Sleeping and Tubes, OH MY!

Fresh Air = Sleepy Girl!

Camping = Double Stroller Time!

You may or may not have noticed that I did not do a "Three Months Home" blog post about Christy, but I did.  I really wanted to do that, but I just didn't have the time, and our camera had gone missing so I couldn't post photos!

So much has happened since my last update on Christy that I can't post it all here, but here are some highlights, and then I'll tell you about her/my first ever sleep study plus updates on her current challenges!

"Wake Up Gi-Gi" (Carese's name for Christy!)

Right after my last "Christy Update" I took Christy in for a weight check.  After her feeding evaluation in July, I realized that she was not gaining weight so on the therapists recommendation I began adding Pediasure to her diet.  After two weeks of doing this I had her weight checked and she had gained 11 oz since she had come home.  So that was working.

Then we left on a long campout.  Our church has a campout every year, but we got up early. This year we arrive on Monday, and the official campout starts on Friday.  Christy did amazingly well at camp, adjusting quickly to the outdoor life.

The only problem was that her crib was right next to my bed.   Before the campout I was aware that she wakened about once a night and at home I would check on her when I heard her rocking her crib (literally) and usually it meant her nose was stuffy.  I'd put a little coconut oil on her nose at the opening of her nostrils to help soften any crusties, and apply some essential oils for nasal congestion and calming and she'd rock herself back to sleep.  I tried rocking her to sleep, but for so many years she has been calming herself to sleep, that if I try to rock her, she wakes completely up and thinks it's time to play....doesn't work at all to put her to sleep again.

Christy's bed right by mommy's
Head = sleep deprived mommy!

Well, it became apparent at camp that Christy was waking many more times than I had been aware, but she would usually comfort herself back to sleep.  But every morning at 4 am sharp, she would wake completely up and start making a lot of noise, between rocking her crib (which would rock the whole trailer) and happy noises as she would see that mommy was right next to her crib.  I would have to work to keep her quiet until she went back to sleep, which usually took 1 1/2 to 2 hours.  Needless to say, I was not getting much sleep at camp, so much so that I had to bail and go home with the girls Saturday so I could get some sleep and not have a complete meltdown at camp!

Christy doing table time, playing with blocks,
as part of her daily therapy/play time at home.

In August Christy and Esther both saw the ENT, Dr Englais (sp?), at Seattle Children's Hospital.  We discussed her snoring and sleep problems.  Esther got exrays to check on her adenoids/possible regrowth but she is all clear!  Christy, however, needs her tonsils out for sure, and the doctor said he was sure she needed her adenoids removed too, but didn't want to exray her for that and just make the final decision during surgery.  We also discussed having this done when she gets her dental work done (did I mention that she needs sedated dental work done due to some cavities?).  She will also get an MRI done when sedated so we have a better idea of the brain damage that resulted in her having Cerebral Palsy or a stroke (we are not sure which she has since we don't know when the brain damage occurred).

She does like to explore her world using her mouth!

The last week of August was our first Post Adoption Report home visit.  We had a social worker from our home study agency come to our home to see how Christy was doing and how well we are caring for her as well as how she is doing in our family!  We got the report back and it was like a pat on the back - she spoke of our family and Christy in glowing terms.  Boy that sure meant a lot to me.  This report should be back from getting apostilled any day now and then I will send it to our adoption agency and they will forward it to the Bulgarian authorities.  These Post Adoption Reports help countries like Bulgaria to determine if it is in the best interest of the children for them to be adopted into families in the U.S. so these reports are vital to the ongoing adoptions for other orphans!

Rachel cutting Christy's nails - Christy does not like this,
but she did give me this great photo between her
complaining and squirming to get away!

Just to see how the dietary changes were working, I had her in for a weight check the day before the home visit and we found that she had gained about a pound since her weight check 4 weeks before - that was great news!

The first week of September was her swallow study.  She did so well, cooperated so nicely, that we were able to get very good information about her swallowing...at least very accurate information.  Christy has major aspiration problems.  She showed laryngeal penetration (fancy term for food going down the wrong tube) on all thicknesses, even pudding.  There is no term for thickness thicker than pudding, so the speech therapist referred to it as paste.  This is not good, not good at all.  Both the speech therapist and Christy's pediatrician are recommending that we place a G-Tube to aid in getting fluids into her, but we are/were hesitant about this.

My happy girl - in the waiting room at
Seattle Children's Sleep Clinic in Bellevue

So, we have been working to get her the proper liquids by giving her apple juice thickened with Thick It to just past pudding thickness.  We were weighing her diapers to see how well she is extracting liquid from her foods/thickened liquids for proper hydration.  If I gave her 1/3 cup of thickened apple juice at each meal, she had more than sufficient output.  But, she has also been struggling to gain weight, so it's a balancing act at getting enough calories into her so adding more fluids (bulk with fewer calories) meant a possible trade off...being hydrated but not gaining weight.  So for two weeks I've been working at this, and it's a struggle and when my life got SUPER busy last week and this week, it was nearly impossible to ensure that she was betting proper nutrition and proper hydration, and as of yesterday the scale said that she had actually lost weight (around 1/2 pound in 2 weeks) when we started adding more fluids....and her reflux has gotten worse too.

Christy all ready for bed - waiting to get hooked up
for her sleep study.  Such a big crib....made me sad
to think of all those years she spent alone in a crib!

Yesterday I met with a nutritionist and we had a long talk about Christy's nutritional struggles.  She watched me feed her lunch while we talked about all of that.  She also recommended placing a G-Tube and we talked at length about the pros and cons of a G-Tube and so much of what she said now makes even more sense, especially after seeing how hard it is to get her properly hydrated when our days are busy.  Yes, the last two weeks were busier than usual, but even taking that into account, it is very time consuming to get enough nutrition into her, and she tires before we are done feeding her and she is refluxing more now due to the greater volume in her stomach at meals.  The nutritionist recommends moving to 6 smaller meals - great idea, but implementing that will be even that much harder for this busy mom. With a G-Tube she can get her in between meals food/liquids via her tube, and just feel her main meals by mouth, and give her fluids at meals through the tube.  It's beginning to sound like the best way to me now.

My beautiful Bulgarian Princess!

I was getting head of thing there...the appointment with the nutritionist was yesterday on our way home from the sleep study and her sleep study set up appointment was on Monday!

On Monday we went to the Everett Children's clinic.  After reviewing Christy's history, and check Christy's stats that day (wide awake and active her O2 stat was only 95%), she said they she was content to wait until after Christy had her tonsils and adenoids out to see if that corrected her sleep problems.  I mentioned that the ENT had called for the sleep study to be done before the surgery so they would know what they were dealing with when she was sedated.  She checked and I was right, so she quickly changed gears and started talking about scheduling the sleep study.  She said that they were scheduling into November, but that she'd put her at the top of the urgent, cancellation list.  She said they would call me tomorrow.  I got the call an hour later and they said they were scheduling into January, but that they had a cancellation for Wednesday night....I jumped on that one!

The cool, light up welcome sign
- doubles as a nightlight!

Fast Forward to yesterday!  We left early for the trip to Bellevue (about 1 1/2 hour drive in perfect traffic), around 3 pm, so I could have dinner with a friend/adoptive mom before the check in time of 7 pm.  We checked in after I got lots of exercise finding the clinic (left the instruction in the car and there was only one sign that I did not read completely as I thought there would be more signs on where to go).  They wanted me to bring her in to discuss the results a couple of weeks after the sleep study, but  was able to turn that into a phone call scheduled since we live so far away, phew!  If there was anything that caused concern, they would call us in two days to discuss that - so far, no phone calls!

After check in, we were shown to our room, and on the way the nurse pointed out an area where there were drinks and snacks that were available to us for free (which I was unable to take advantage of, except for a cup of coffee on the way out - but it was pretty good coffee!).  Then we got down to the business of filling out forms and getting Christy ready for bed.  She looked so tiny in the big crib!  She does not look like a 4 year old!

"Watch this - I can do the magic table cloth trick!"

Yeah, not a happy Christy...

Once I was done and she was ready, the wiring began!  They stuck things to her head for the EEG and then wrapped her head like a war wound victim and then a kind of stocking thing over all of that.  Then she put on waste bands to measure her work of breathing, monitors to her legs to check for restless leg movements and the PulseOx to her toe.  Lastly they attached a nasal canula that had things attached to monitor her breathing through her nose and mouth - this did not go over well with Christy at all!   After everything was attached, the gazillion wires were held together like a big pony tail down her back.

What does the hand say about the nasal canula?  NO!

Overall, Christy took it all in stride.  But her method or rocking herself to sleep, and moving in many different positions as she does this made things difficult.  As she would get close to sleep, some electrode or another would come off.  They also ended up with the PulsOx on three extremities trying to get a better reading, but 95% seemed to just be her best reading.  After 1 1/2 hours, she finally fell asleep...with that "hat" pretty much off her head.  Around 1 am she started into her waking/rocking herself to sleep pattern.  At one point they nurses had to come in and try to put the stuff on her head back on.  It lasted a little while.  At some point they added two additional waist band monitors too.

They ended up waking her up completely and making her unhappy with them twice in order to adjust things (mostly her nasal canula thing).  I got some sleep, but not much.  I heard Christy stop breathing many time, but usually for less than 10 seconds, so I am really curious about the results.  At 6 am it was wake up time (we had no choice and it was a bit shocking!).  Christy was a wired mess and looked like she had been tumbled in a dryer overnight!  It took a while for the nurse to removed everything, but overall, Christy just hung out and tolerated it all beautifully.....right up until I was washing her hair in the sink (no counter).

Finally we were ready.  Christy still had weird substances in her hair, but I put most of it into a half ponytail and that hid the worst of the problems....what I really needed was some detangler or conditioner (the hospital provided baby shampoo).

Christy ready to go home - did the best I
could with her hair as I couldn't get all the
gel out without traumatizing her!

We made a hasty get away, and I headed north - stopping to do the family shopping halfway home (she had taken a short nap on that portion of the journey).  Christy also had a physical therapy session late in the morning.  There we discussed acquiring braces/DAFOs for Christy to get her set up for weight bearing/gate training/walking practice.  Then I met Daryl for lunch (had only seen him for 10 minutes since Sunday night!), and then Christy and I were off to the nutritionist appointment.

So I'm editing to add that I just found out that the Sleep Clinic called yesterday.  I was able to talk to a nurse about her sleep study results already.  Christy does have obstructive sleep apnea.  Her O2 stats were on the low side, but not of urgent concern.  The study showed that she wakes often, but did experience REM sleep and deep sleep at least for  little while.  Thankfully, they believe that her tonsillectomy might correct this problem.  So we are moving forward with scheduling her surgery.  She will be having a tonsillectomy, adenoidectomy, dental work,  MRI and G-Tube placement all at one time so she only has to go under general anesthesia once (she was intubated for 5 days following her open heart surgery, so there is concern).  I still have many phone calls to make!

Wow - I feel like God gave me a cushion of time with Christy without any major medical issues.  That cushion is now gone.  It's time to get down to business.  Time to address her issues and work to make her life as pleasant as possible and enabling her to grow and develop and sleep (sleep is so important for growth and development, and so is proper nutrition and hydration)!

All Tuckered out - taking a nap on the way home!

I am excited about what the future may hold for Christy.  She has been doing so well - learning new things, actively exploring her new world and interacting with her new family.  Just think how much better she will do when she is not being hampered by her health issues!

I am also overwhelmed, but I've had two of the most incredibly busy weeks of my life.  Next week the only thing on my calendar is Christy and Esther's therapy sessions on Tuesday.  But that might change - I am making the phone call today about Christy getting a  G-Tube.

Musings on a Dark Night

Three Years.

Yep, it's been three years since Esther has been sick enough to be hospitalized.  Just 6 days past the 3 year mark and Pneumonia has taken up residence in Esther again.

This time it happened much faster, but I was prepared!  Since her last bout with pneumonia I purchased a new stethoscope and a Pulse Oximeter from Amazon.  No, this was not recommended by her doctor, but I knew I needed to be equipped so that if Pneumococcus came around again I could get Esther the help she needs before she became so very very sick like last time.

After her last bout, our doctor prescribed breathing treatments (albuterol and pulmicort) to be administered to Esther whenever she contracted any respiratory illness.  This has been invaluable in keeping her out of trouble!  But I still ended up taking her in to the doctor so many times when she was sick "just in case" to be sure that she wasn't going bacterial.  That was working well, but a fellow mom of a child with Down Syndrome told me that I could purchase a PulsOx online - I was all over that!

With the PulsOx and my stethoscope (I listened to her when healthy and when sick and listened to recordings of different breathing tones from an online site) I was able to track Esther's breathing and be able to note changes, both good and bad, when she was ill.  The PulsOx really helps as you can't look at a child and tell how well they are oxygenating unless it is really bad, and you don't want to go there - blue lips are terrifying!  Even faster breathing/increased work of breathing don't always tell you what you want, especially if you are administering breathing treatments at home, as the medications your child breaths in can temporarily cause increased heartrate and faster breathing - so it can be a false indicator of how your child is doing.  And a child relaxed in sleep an look like they are breathing fine, when in reality their oxygen level is low enough to cause concern and you really can't tell!

Esther developed a cough on Thursday (her little sister had been sick with a cough for about 5 days).  I started breathing treatments right away.  Friday she had a fever but still was playing almost like normal so I wasn't concerned.  Saturday no fever, still a cough, so I continued breathing treatments (I listen to her breathing and us the PulsOx before and after breathing treatments as much as possible).  Sunday after her morning breathing treatment her breathing did not clear up as much as I liked and decided to take her in just to make sure I was on track.  At the dr appointment, I realized that the prescription had been printed incorrectly and I was supposed to be giving her the Ibuterol every 4 hours ( as it had been in the past) and not every 6 hours like it said on the box.  I should have checked....anytime your child's prescription refill comes back with a change that you did not hear about directly from the doctor, please check with the doctor!  I had noticed a change on her pulmicort prescription as it said "use daily" whereas before it was "use twice daily" - and yes, that was a typo.  People make mistakes, pharmacy technicians make mistakes.  When it comes to your child's health, it never hurts to double check, but missing something can.

So since it was 3 hours since her last breathing treatment the doctor had us administer her next ibuterol nebulizer treatment there in the office as she also noted that Esther was wheezing a lot, all over her chestl both on inspiration and expiration.  That helped - not a lot, but her O2 levels were on the low side of acceptable - 94/95 verses 92/93.  So she sent us home doing Pulmicort twice daily, and Ibuterol every 4 hours around the clock.  I was to take her back in if she got worse, or if there was no improvement by Tuesday.

Sunday she did good, Sunday night/Monday morning she was still doing well.  Her breathing was a little noisy, but would clear up with breathing treatments and her oxygen levels were OK (94/95%).

Around dinner time on Monday I noticed that she was not wanting to play, looked a little off (red around the eyes), and was easily upset.  I noted this so was extra careful when her next breathing treatment time came around.  In that short time, she had been watching a movie and seemed OK, but when I picked her up she was warm, quite warm.  I listened to her breathing and she was junky everywhere.  Her O2 was around 91-92.  After her breathing treatment I listened again and the first three areas I check sounded nice a clear, but the last area (her lower right) did not.  At first I didn't even heard breathing sounds.  Then I heard more of a popping/gurgling and then a little wheezing.  Yep, red flags for me.  Her O2 had not improved either.  I decided give her some Advil (I have found that Advil can help with breathing as it is anti-inflammatory and can help to reduce inflammation in Esther's narrow airways, and her doctor has confirmed this as well as my own research online)  and to call the Dr office and put her to bed, hoping that over the next few minutes and a change of position would bring on a change for the better.  Nope.  By the time I was on the phone with a nurse, she was asleep, 102 degree fever, breathing 50 breaths per minute and her O2 was down to 88 and staying there and that right lower area still sounded wrong.  The nurse confirmed my conclusion...she needed to go to the ER.

We arrived just before midnight and they pretty much took her right back to a room.  Long story short, I told the doctor what I had been doing for her and what I had noticed in her breathing.  He asked if I was a nurse.  I said no, but that I was Esther's nurse and knew her, better than anyone else.  I said this with confidence, but I was not "in his face".  He thought it was great that I was so pro-active in her care!  He said that he was hearing exactly what I had described to him, but he wasn't sure what he was hearing, so he called for exrays and had us administer blow by oxygen to help get her O2 levels up. After the chest exrays the doctor came back and said I had been right on.  She had a small area of pneumonia, he believe just beginning, and that she needed to be admitted, and ordered her to be started on IV antibiotics and fluids as she was not interested in eating or drinking (and had not done much of either all day).

There wasn't a bed ready for us in Peds (the pediatric floor) so we had to wait in ER for a seemingly long time.  The pediatrician on call (happened to be the very first pediatrician to care for Esther when she was transported to the hospital after she was born at home and was struggling to "pink up").  I told him everything and he was so encouraging and said that he thought that we had indeed caught this right away and that she might do very well since we were getting the antibiotics on board before the bacteria went rampant.  I have to admit I was so thankful that I had been so proactive in her care!

Finally, around 4 am, we were transferred to a room on the peds floor.  We settled in and soon Daddy came to visit and bring us some things from home before going to work.  She finally fell back to sleep again just before her Daddy left and slept until around 8 am (she had slept from after the IV placement until just before moving to the new room).  I, however, was not able to sleep...as her alarms would go off if the blow by got moved too far away from her face when she would move in her sleep.

Through out Tuesday, she was wakeful, but content to stay in bed, play with her dolls or watch movies.  Her O2 was hovering around 92, but would occasionally drop below 90 so I'd have to do the blow by when that happened.  By the afternoon we were no longer doing blow by, so I was happy about that.  The new pediatrician on call confirmed that she needed to remain in the hospital until she can stay above 90% while sleeping without any extra O2.  I was really hoping that she would do well.

Within minutes of falling asleep, her O2 hit 84%...alarms set off and I knew I was in for a long night,  She pretty much needs to have the O2 nearby to keep above 90%.  I have gotten a few cat naps between alarms, but Esther moves a LOT in her sleep.  Right now it's almost 1 am and I just didn't feel like trying to sleep again..of course, she's not had her alarm go off more than once while I've been writing!  Go figure????

Until Esther, I was never woken in the night by an alarm clock that I set so I can wake up  my child and care for them.  This started when she came home (tube feedings via a pump among other things), and has been a part of my care for her whenever she is sick.  It just goes against my mothering instincts...it just seems wrong to wake a sleeping child!  Thankfully Esther is a good sleeper and goes right back to sleep, and sometimes even sleeps through her breathing treatments!

Nights like tonight, weeks like this week, test you as a mother. They test you are a person.  They test what you really believe.  They test what you are willing to do.  When Esther's oxygen alarm goes off, I rocket off the "parent couch" before I even know what I am doing.  I quickly check to see where the Oxygen mask is and get it in place (all the while that alarm is screaming at me).  Then I start shaking if I am not already (adrenalin),  Once she is back up into the 90s, I check her blanket, position and diaper.  If her stats are slow to come up I check her leads and positioning to see what is interfering.  My goal is to be a little of a bother to the nurses as possible without jeopardizing Esther's health - I've heard other mothers crying in the hallway, I heard the other baby's alarms going off every few minutes, I know my nurse is dealing with a very sick baby next door.  Once she is doing well I settle back onto my couch and watch her for a while and pray for her if I remember, then I try to sleep again.  Only it takes a while for my heart to stop racing.  For the panic to subside.  And then just when I drift off, or maybe even before that, the alarm goes off again.  All I want to do is sleep.  I haven't truly slept in nearly 48 hours now.  But I have to keep on keeping on.  For Esther, Because she needs me to.  Because this is what God has called me to do.  And to do it without complaint (OK, so I'm not very good at that one, but God is working on me, especially this week!

You know, in America, we are sold the "American Dream" and commercials yell at us to "have it your way" and have "the easy life."  But God calls us to die to self, to live for Him.  Two very different world views.  When I am out in the public eye like I am right now, I interact with people who can not fathom why we would have so many children.  But it completely blows their minds that we would adopt ANOTHER child with special needs.  What an open door to talk of God, His blessings, and His amazing Grace!  If we Christians are living the American Dream, will anyone ask us why we do what we do?  Or how we do what we do?  God is glorified when we are stretch to our limits and beyond and are living only by HIS grace as then others will see Him in us and stand in awe at what God can do through mere mortals, even though they don't realize that they are seeing Him.

So, why did I tell you all this?  Because I was contemplating a lot of things tonight.  I needed to talk and there are very few people around, even online, to talk to.  And then I thought maybe there are other moms out there with children with respiratory challenges that might benefit from what I had learned, or find encouragement in knowing that they are not alone in the struggle to take good care of their children with special needs.  Maybe you are expecting a baby with special needs and want a glimpse into your possible future.  Maybe you are adopting or considering adopting a child with special needs (YAY!!) and want to be prepared.  Maybe you can not relate to anything I have written, but you know someone who does...maybe you can better understand what they are going through when their child is sick.

I have to admit that after this week (read my blog post from earlier today - 11blessings.blogspot.com)  that I wonder how in the world I can possibly care for two children with special needs and how I will do what I am doing right now when one is sick.  I don't know.  I can't see the future.  I am not in that future.  And I keep reminding myself that God has called me to this.  That He promises the His grace is sufficient. Not for tomorrow.  Not for the "What If"s.  But for THIS MOMENT.  This second.  The next breath.  I keep reminding myself when I worry or fret about tomorrow, I am on my own and disobeyng God's command "do not worry about tomorrow."  As I have heard it said, when the going gets tough, get on your knees, or something like that.

Whatever your reason for reading this, my purpose is, hopefully, to give a helping hand to others walking down this road or walking with someone on this road.  The road of giving for the sake of another.  Caring and loving when all you want to do is be cared for and be loved....caring for the "least of these" because that is the job God has given to you.  To serve unseen.  To give your last ounce of energy without anyone noticing.  No finish line, no trophy, but an undying love for you child and a deep appreciation for the gift that your child is, even though others see your child as a burden.  ALL children are blessings - especially those with special needs.  The blessing is in learning to give when you have nothing left to give, and to hang on tight to your Savior when you are hanging by a thread.  God is faithful.  If Jesus is your Lord and Savior, then you too have the promise that He will always give you the grace for any and all circumstances that you find yourself in.  Not strength from yourself, but that peace and strength that is given that you can not explain, that does not make sense.  It's called grace - unmerited favor.  We don't deserve it, but God gives is freely and it is always sufficient.

If you don't have Jesus as your Savior, then you do not have The Creator as your Father, and you are on your own, and that is a very, very hard place to be when you child or loved one is sick and suffering.  If you want to read about how you can have Jesus as your Lord, and the Creator as your loving heavenly Father, please read my blog post First Things First (or how to know you are saved)

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